The Multiple Realities of Autism in Practice EMILY HADDOCK Ed.Doc
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What is autism really? The multiple realities of autism in practice EMILY HADDOCK Ed.Doc 2020 1 What is autism really? The multiple realities of autism in practice EMILY CATHRYN HADDOCK A thesis submitted in partial fulfillment of the requirements of Manchester Metropolitan University for the degree of Doctor of Education Department of Education Manchester Metropolitan University 2020 2 Dedication I dedicate this thesis to my parents; my mother, who inspired me to enter the field of education in the first place and gave me the confidence to speak up, stick to my guns, assert myself when I needed to, demand respect, and stay true to my values; my father, who made me believe that whatever decisions I make or risks I take I will always be supported, protected and loved; my friends, who support me, distract me, laugh and cry with me; and my brother and best friend, who ensures, that no matter what I achieve, I can never take myself too seriously; and finally, to the children who have inspired and enhanced my life. The greatest of those thanks has to go to Alan and his family who first started me on my career in autism and whose family I have the pleasure of continuing to call my friends. 3 Abstract This thesis aims to examine how we can involve autistics in research, policy making and as active participants in decisions which impact their lives. It will consider the reality of the condition of autism and how this is presented through a range of facets: medically, academically, and educationally; specifically focusing on the diametric portrayal of autism as beatified gods and a demonised disability. It will also use the teachings of Gert Biesta (2008) to review the role of special education, compared to mainstream education and consider the similarities and differences in the purpose of education between these two settings. The epistemic injustices which are committed against autistics will be reviewed, why this occurs and the impact of this injustice upon the autistics and knowledge itself. In order to combat the looping effect of autism it is argued that a case study approach mitigates the epistemic injustice committed against autistics . These representations of autism are presented to an autistic adult himself who, whilst being autistic, is also the father to two autistic sons and works with young people with autism. In a unique approach, the autistic subject is positioned as an expert of their own condition and use their insights, my own professional observations as an active practitioner and a head teacher of two special needs schools; the impact of the perceptions of autism will be considered and the ways in which knowledge on autism is disseminated and how this impacts on the lives of the autistics themselves. 4 What is autism really? The multiple realities of autism in practice Emily Haddock Contents Dedication 2 Abstract 3 Introduction 6 Research Methodology 19 Case study 19 Epistemic injustice in autism 22 Autism and testimonial injustice 25 Simon as an expert of his own condition 27 Why can the reality of autism never be truly captured? 29 The changing perception of autism 31 The looping effect of autism 34 Autism: impossible to define? 35 Conclusion 40 Situating autism and education 42 The autistic condition and the impasses of research and medicine 42 Situating autism within mainstream education 47 Situating autism within special education 50 What is the impact of the polarising perception of autism? 55 The autistic savants 57 The disabled autistic 60 Polarising views and professionals 63 Polarising views and families 65 Society and the ‘invisible autistics’ 68 Conclusion 69 The location of autism in institutional educational provision 71 What is the purpose of autism education? 74 Intervening in autistic education 78 Behaviour Analytic Approach 82 Theory of Mind 86 Conclusion 89 5 Conclusion 92 The autistic oppressed 92 The autistic signifier 95 Autistics as experts of their own conditions 96 Next steps with the autistic experts 97 Final remarks 101 References 102 6 Introduction In recent years, there has been a dramatic increase in the rate of autism diagnosis in the population; in 1967 only 4 to 6 per 10,000 people were diagnosed with autism (Lotter, 1967; Baron-Cohen, Scott, Allison & Williams, 2009) compared to 1 in 110 today (Centers for Disease Control, 2009; Brugha, Cooper, McManus & Purdon 2012; Leonard, Dixon, Whitehouse & Bourke, 2010) which means that autism is considerably more common than Down’s Syndrome (Walsh and Hurley, 2013). The escalation in prevalence has meant a surge in public and professional interest in autism as well as an increase in research into the biological basis of this inscrutable condition (Walsh and Hurley, 2013). Due to the highly complex and diverse nature of autism, its exact causes remain elusive (Toth and King, 2008; Chakrabarti, Dudbridge, Kent & Wheelwright, 2009) and professionals struggle to reach definitive agreement on strategies which effectively support autistics (Francis, 2005; McConnell, 2005; Odom, 2003). This situation is particularly acute in educational settings, where there are difficulties in agreements of what interventions are useful in improving the outcomes for young people with special needs (Francis, 2005). Unlike many special needs practitioners who enter the field due to personal experiences (Sands, 2017), I did not. Until recently, I did not have any personal experience of disability or special needs and initially became a teacher as a stepping stone to becoming an educational psychologist. However, I quickly realised that I loved teaching and the direct contact with the young people, which I would not have as an educational psychologist, and so decided to pursue a career in teaching. In September 2010 I embarked on the journey of my teaching career, a proud student on the Graduate Teacher Programme, at that time, a prestigious teacher training programme where you learnt on the job, but more importantly for me – received a salary whilst training! By chance and fortune I had been placed in an outstanding special needs school for my main placement and thus began a love and interest in special needs. I felt both comfortable and challenged as a special needs teacher, with just the right degree of determination, strength, empathy and challenge that is needed. I struggled in my second placement at a mainstream school and was pleased when due to a bizarre winter of heavy snow my second placement was cut short and I was free to return to the safety net of special needs. I enjoyed the freedom that being a special needs teacher gave me; the norm 7 was for lessons to be creative and led by the children’s moods and interests and this matched my own ethos of what teaching should be (as written in a credulous essay for my qualified teacher status). I first began working solely with young people with autism, at a specialist resource unit (SRP) for young people with autism within a mainstream setting. The SRPs were established in Manchester in 2011 in mainstream high schools for students with autistic spectrum conditions and speech and language disorders. The provisions had 27 places across six primary schools and 28 places across three secondary schools. The students were assessed at a panel, involving teachers, Special Educational Needs Coordinators (SENCOs) and professionals, in order to determine whether they should be placed at special school, SRP or mainstream with support; the parents and students did not attend but their views were taken into account. The SRP’s aims were to improve the quality of education for pupils with social, emotional and/or behavioural difficulties by providing a greater scope for inclusion in mainstream settings. The idea was that this would create an environment where mutual respect and self-esteem was developed and valued in both students and their peer groups. It would be mutually beneficial to all students in school by having the SRPs as a part of the school. At this point in my career I thought that this approach would benefit the autistics; that integrating with normal-cognitively developed children, they would develop their own skills through osmosis. I also felt that there would be an increased attitude of inclusion and reduced incidents of bullying; to give the scheme some credit, this was the case and the young people with autism were accepted and encouraged to interact with their peers. However, to my surprise, this did not have a positive impact on the autistics themselves; they simply were not interested in interacting with their peers, due to their impairments in social communication. It was this first interaction which caused a disruption to me – why are we adopting this approach, in the best interest of the autistics, when the autistics have no interest in it themselves? Has anyone asked the autistics what kind of education they would like? However, despite these disruptions beginning to form in my mind, in my arrogance as a practitioner and researcher I felt that I had greater insight than just your average teacher (at 8 this point not considering that I should be considering the autistics insight, not the professionals). I minimally engaged with autistics to gauge their views but ultimately adopted my own agenda as I felt that one of the key ways to support young people with developing their social skills would be to improve their communication skills and therefore made a strong investment into speech and language therapy. At this point in my career I thought that autistics’ impairments in social interaction was based on the fact that they did not know how to interact. During this time I observed normal cognitively developed young people attempting to interact with autistics; over time, and through genuine consultation with autistics, my view changed that it is not that they do not know how to interact but that they do not want to interact.